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Scleroderma (Systemic Sclerosis): Anyone else?

Autoimmune Diseases | Last Active: 22 minutes ago | Replies (69)

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@jandy88us
@jandy88us

The feeling of "carrying weights" may be a sign of worsening inflammation, which is a part of scleroderma progression. It also causes nerve inflammation and sensation of burning. A rash on the hand - may be a sign of vasculitis. Sometimes, low dose prednisone is prescribed for autoimmune neuropathy. I would ask my rheumatologist if prednisone taken with Mycophenolate is indicated in scleroderma.

Have you tried ibuprofen? Not a cure but may help with the symptoms of not feeling well during flare-ups. Coated formulas or soft gels are better for the stomach. Ask your doctor first if it is OK to take it with Mycophenolate. She/he can also prescribe Ibuprofen Coated ER 600mg formula available only by Rx.

Living with Scleroderma is a difficult journey, and it takes time for Mycophenolate to work. You may feel better after 1-2 months on the drug. It slows down inflammation and disease progression. Other medications prescribed in Scleroderma, like methotrexate (for arthritis), also may be added to Mycophenolate by your doctor. This usually happens when no response in 3-6 months on single agent therapy. Methotrexate is a chemo and has some unpleasant side effects. A Biologic drug Actemra injection (RA, SS) is prescribed only for interstitial lung disease in scleroderma (ILD). It also works on skin and joints. If well tolerated, may be a good choice. But it is prescribed only when ILD is documented.

Please keep in touch with sharing your symptoms and keep posting your progress with Mycophenolate. Best regards

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Replies to "@jandy88us @jandy88us The feeling of "carrying weights" may be a sign of worsening inflammation, which is..."

Thank you so much for your response!
I will definitely ask my doctor at the next appt.It makes such a difference to connect with others on this journey! How are you doing?

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@altabiznet Thank you so much for responding and sharing information about the medication I am currently on! How long have you had Scleroderma.
I will ask my doctor about the ibuprofen. I hope you're having a good day today!!